Sunday, April 15, 2007

MUM

Both Ellee and James have been focussing on care of the elderly, and jmb recently wrote a moving post about Alzheimer's disease. These are subjects close to my heart as you will see, and, as Sicily does come into the story, I thought that today I would tell you what I was faced with when my mother became desperately ill. I do not think that one would encounter such an attitude from a medical professional here and, with the proviso of course that I can only comment on what I have seen or discussed with friends, families do still seem ready to take responsibility for their own elderly folk in Italy. There are many reasons for this, the most important being that it is still a very family-orientated society, but other factors are that fewer women go out to work here than in the UK and so are able to take on the caring and houses here do tend to be more spacious. The casa di cura [care home ] is regarded as the last resort. I have been looking at some figures here. But Italy has an ageing population so it is difficult to predict what the situation will be in a few years' time. The following, which I wrote whilst still in Britain, is the story of a terrible night and the run-up to it:

MumThe nightmare began the night I got back from the first Italian exchange to Sicily, just before Easter 1993: Mum had come to stay down here for the fortnight in order to look after the dog and the house. I’d been in regular phone contact with her and she seemed fine, even looking up an obscure quote for me at one point. Anyway, that night she burnt some food and it struck me that normally she’d have been quite upset about it but she just didn’t seem bothered. The next day there were other things - little things- that seemed strange to me, too. They were so trivial that only I would have noticed but I was worried enough to ask my neighbours if they’d noticed any change in her behaviour; they all said no. It went on like this for a few days.

Mum was here on the night of 23rd April and she suddenly asked me why all the lights had gone out. It took me a minute to realise that there was something terribly wrong but when I did I immediately dialled 999 and then called Katie [my neighbour who is a nurse]. Mum was talking incoherently and calling for Dad. She said, "He’s only downstairs in the shop." [My Dad had been dead for twenty years and the shop he had was sold in 1959.] The ambulance took us straight to the Heath [Cardiff's main hospital] and they said they thought it was a TIA or mini-stroke. They stabilised her and I left at around 6am. At that time the emergency admissions entrance was just in front of the maternity unit, and, as I left, a woman obviously about to give birth arrived. I remember thinking, "life and death".

They only kept Mum in a couple of days. They confirmed the TIA diagnosis and when I asked the registrar if it was likely to happen again, he said it was unlikely provided she took an aspirin every day. I believed him because I wanted to.

Mum went back home and seemed OK at first. One Friday I got there from work and thought her eyes looked a bit strange. I had an appointment to see her GP , up the road, as I wanted to ask him some questions. When I told him my concerns, he drove straight down to Mum's with me and examined her. He couldn’t find any abnormalities.

I began to keep a diary - it was just instinct. I had a feeling I would need to go through all these incidents with someone in authority one day. Things were getting more and more bizarre, you see [and dangerous; one day I arrived at Mum's to find no sign of her but three badly burnt saucepans on the hob].

On the morning of 22nd May, a Saturday, I got there, let myself in and there was, again, no sign of Mum. [She knew I was coming.] No one had seen her leave the building and she hadn’t left me a note. This was so unlike her - she knew I would worry. I spent a frantic couple of hours phoning round: I called Katie , to check she hadn’t turned up here; called friends; considered calling the hospitals; I was afraid to go and look for her in case she turned up or in case there had been an accident and someone called her home. [This was not the era of mobile phones.] Besides, I didn’t know where to start. Mum eventually turned up, calm as anything, saying she’d gone up the road to buy a bottle of gin for me. I went bezerk at her.

I was so ignorant of the effects of stroke at the time. I knew about partial paralysis and dysphasia but I knew nothing about stroke-related dementia. I just couldn’t understand what was happening.

Well, I was trying to do my job and keep checking on Mum. There were so many strange things happening with her ; it was like everything I’d ever read about Alzheimer’s except for one thing - this was all so quick.

One day she came down here and left the front door open. I had a go at her, telling her that the dog would get out. She said, "No, he can’t" and I just couldn’t make her see that he could get through that door! Then there was some sort of incident in the corner shop ; she accused them of shortchanging her and came back with a load of figures written down which were meaningless.

Then she started arriving here at odd times in taxis [which she didn’t have the money to pay for]. I’d pay them and try to reason with her; I didn’t realise that you can’t reason with someone suffering from a kind of dementia.

One day we were in Safeway’s and she put five poussins in her trolley! [Neither of us had a freezer at the time.] I just couldn’t reason with her and I got exasperated and shouted at her. Everyone was looking. Why didn’t I just pay for them?

By now I was calling Mum's doctor regularly. I kept telling him I knew there was something wrong. To be fair to him, he’d always respond to my requests that he go and see Mum; he’d ask her some stupid questions, like who was the prime minister, and declare that she was OK. It wasn’t his fault - he just wasn’t catching her at her "odd" moments. I’d also got in touch with the Stroke Association and the South East Wales Alzheimer’s Careline; both were helpful and the latter were wonderful. They took what I was telling them very seriously; one of their medical staff went to see Mum and was as worried by the speed of the deterioration as I was. I knew there was a memory clinic at Cardiff Royal Infirmary and I’d asked her doctor to refer Mum, which he agreed to do, but the Careline people bypassed the usual procedure and got us an emergency appointment, for 9th June.

Now we come to the incident of the ring, the sapphire and diamond one that I always wear. I was here doing schoolwork on 3rd June [it was half -term] and thinking , I admit, how lovely it was to have a day’s peace when my friend and neighbour Martha rang and said , "Your mother’s just arrived here in a taxi." I admit my first reaction was one of anger - "Shit, can’t I have a day without this?" , then I went up to Martha’s and paid the taxi off. Mum was sitting there looking flushed and excited. Then she presented me with the ring: "I want you to have something to remember me by, darling." It was heartbreaking. She’d spent her whole pension on it - Mum, who had always been so careful! [I’d discovered,by the way, that she hadn’t been paying her rent in the previous weeks - out of character again.] Anyway, she was so pleased she’d got me this ring; apparently she’d got the taxi from home, not from town, and made the driver wait outside Samuel’s while she got it! So I thanked her and hugged her, put it on and told her I would always wear it, which I do. Then Mum came up here to see the dog - it was the last time she set foot in this house - and said she was off to meet her friend Margaret. [I later found out that Mum didn’t turn up.]

I think that the taxi rides - which were always to me - were bizarre cries for help. I also think that she was feeling too physically ill to walk very far, but she wouldn’t admit it.

That weekend she seemed calmer but on the Monday she went in to M&S with Margaret and bought herself a pretty dress on the spur of the moment. [She still hadn’t paid any rent and I could not reason with her.] Did she know she was dying and decide she was bloody well having things? Did she always secretly want to be extravagant like Dad? Or was it all just part of this seemingly manic phase? I don’t know.

On the evening of Tuesday 8th June I went to the flat: Mum was wearing the pretty dress ; I can see her now, so pleased with herself in it! I was trying to sort out the rent book, about which she was totally unconcerned. I left her at about 20.00. I was worried but we had the memory clinic appointment the next morning [I’d arranged time off to go with her] and I kept telling myself, "Someone will realise tomorrow; someone will help us."

At midnight the phone went. It was Mum, saying that she had suddenly become a rich woman and I was to come to the flat immediately. I tried to calm her, saying that it was midnight, we had an appointment in the morning, etc., but she became very demanding. [Now Mum had never been demanding; if anything, she was much too gentle, so this really did frighten me.] I called Martha and, kind lady that she is, she drove me to Mum's.

What happened next is imprinted upon my memory, but if it wasn’t I have documents to refer to for I wrote it all down later in a formal complaint.

The sight that greeted us when we got to Mum's was distressing beyond belief: For the first time in twenty years, I was actually glad that Dad was dead; I wouldn’t have wanted him to see this [or any of what happened in the ensuing weeks and months]: Mum was flushed and kept dialling and redialling my number. I was saying, "But I’m here, Mum." She kept saying, "But I’m rich and I’ve got to tell Pat - why doesn’t she answer?" - "Because I’m here, Mum"... I went out to the hall phone and dialled 999. I couldn’t think what else to do.At one point Mum did drop the phone for long enough to go and knock up the warden: "I’m rich; I’m rich and I’ve got to tell you!" [Funny that it all related to money, isn’t it?] I almost had to physically restrain her from waking up other neighbours. In Mum’s hand was one of those stupid "You may already have won" letters; to this day, I think there is a campaign to be fought in making companies more careful about where they send these. [The next morning I found another lot of senseless pencilled figures in the kitchen.] Then the dialling and redialling began again. [Have you ever had that "This can’t be happening" sensation?]

The ambulancemen came: They took one look at Mum and said that they thought it would be better to call out the GP, as the GP could get her admitted straight to the right sort of ward. [I think they thought that she was a case for the psychiatric hospital and that they were trying to save us from having to go through casualty.] The ambulancemen called the surgery locum service on their radio.

Between 01.30-02.00 a doctor arrived. He was obviously not pleased to have been called out! Before he entered the flat, I tried to explain to him what had been happening but he physically pushed me aside. I did say that my mother had been acting strangely for a few weeks but that what was happening now was utterly incomprehensible; I said that I thought she needed to go to hospital to be thoroughly checked over. He said, " She can only go to hospital if it’s an emergency". I said it was an emergency! He entered the room, looked at Mum, and said, in front of her [she was still dialling], "Of course, all you can do with these Alzheimer’s people is give them a tranquilising shot." [Now, whatever was in Mum’s confused mind at that time, she knew what Alzheimer’s was; how could he say that in front of her? - He hadn’t even bothered to examine her.] I couldn’t believe that this was happening on top of everything else: Here was my mother, "going mad" as it seemed, before my eyes, and this guy wanted to give her a valium?! [Looking back, it would have made more sense if he’d offered it to me!]

Anyway, I managed to say that I didn’t think that that would be sufficient and that I didn’t think that a non-medical person could handle the situation overnight. To this, he said, "Why haven’t you told your GP?" [!!!!] Then, because I was refusing to let him administer the valium, he said, "You called a doctor, didn’t you?" I replied, "Yes, and god help me, I got you!" [Mum was still dialling and dialling, saying "I’ve got to tell Pat."] I was at the end of my tether by now, so I wrenched the phone from Mum and redialled 999. The ambulance controller said Mum couldn’t go to hospital without the locum’s permission. So I then decided I’d scream at the doctor till he gave in , which he did. I put him onto the controller and he said, "Oh, you know what she’s like - shouting and screaming." I said, "I’m shouting and screaming to get you to do something!" The locum then wrote the casualty referral and left, passing a remark about me to Martha on the way. Mum started dialling again.

I opened the casualty referral; it gave a few cursory details about Mum - he never did examine her - and it also said "situation combined with the daughter shouting and screaming." This could have prejudiced casualty’s willingness to communicate with me, but did not.

The same ambulancemen came back; they were very kind. They sent me out of the room so that they could get the phone off Mum. It was now so distressing that they advised me not to get into the ambulance; Martha and I followed in her car.

Once we got to CRI and, from there, the Heath, the attitude of the medical staff was completely different: they realised that this was extremely serious and were kind with me. At the Heath they admitted Mum to an acute ward straightaway. They said that they didn’t know what it was, but they felt that it was something physical, not mental. The receiving doctor at the Heath was on the team that looked after Mum, and that helped a lot during the weeks to come.

I talked to a nursing tutor friend the next day, and she said that there was nothing else I could have done that night. When I spoke to the Careline people, they said that it is very common, in cases where the elderly, possibly mentally ill are involved, for call-out doctors to be dismissive. So I thought, that had been me that night, and I’d been prepared to fight for Mum. What if it had been some old dear who wouldn’t have stood up to the doctor? What would have happened then? So I made my mind up to have a battle. I lost it, but I think I managed to highlight some issues and hopefully make some people more careful in their dealings in such cases. I have to say that the medical care that Mum received once admitted to hospital was superb. But no one should have to go through what Mum and I did on the night of 8th - 9th June 1993.

Three months later Mum died in my arms. Not until the post-mortem was it established that she had suffered a massive stroke that night in an area of the brain that did not show up in any scan available at the time.

And even fourteen years later and many miles away, on the island of Sicily, sometimes when there is a dawn Scirocco and I cannot sleep, I go over and over the events of that night in my mind...

23 comments:

Where can we start? Incredibly brave of you. I had an attempt at writing about my mother and can't. Yet. Similar disorientation. Some similarities like leaving home and driving the wrong way down the road. Don't want to say more.

It happened, Welshcakes. It's done. We must consider the living of life now and have no regrets. We must especially not consider our own time is coming.

I don't know if your mum's character was like mine but mine was eminently practical and I know she'd not want me to dwell on the last years and months but on the good memories.

I'm mostly concerned with you tonight - I mean, after the blogging's done. It's good to remember and to revere but I'm not sure if it's good all the time.

My thoughts will be with you tonight and tomorrow morning. Remember good things, please. As for the medical staff, as I said before, it's done now. I agree with you but ...

On the other hand, please let the post stand because it's important. It's the next move in coming to terms with things and I'm still behind in this area.

Oh, WElshcakes, what a terrible, terrible memory to have. But how well you dealt with it and how good it was that your mum had you there to fight her battle.

There was nothing you could have done though that would have prevented the stroke or the dementia. Be glad she remembered who you were and that you were the one she turned to first, in every situation.

And enjoy the many good memories I'm sure you have of her in healthier days.

Steve, you are kind. Thank you. I didn't feel very strong at the time! James, I know exactly what you mean about the disorientation. Thank you so much for your kindness and concern. Yes, my Mum was much more practical than me and she would want me to be happy. I'll be fine tonight - don't worry - Simi will cuddle up. You take care yourself, dear friend. Thanks, dear Liz. Yes, for a long time I had only those awful memories but slowly the happy ones came back - and they are many.

It must have been so difficult to write....but thank you for writing it. Thank you for sharing it with us.

James is right, I am sure our parents and grandparents would want their lives remembered, instead of the pain of their deaths... but sometimes it's so hard to remember anything but the difficult end.

How can we change the system, WL? Do you think we can?

The elderly in America are often abandoned at nursing homes, they don't get taken into their children's homes as Italians do. I wish there was some way to change it! Too many elderly are being dismissed or abandoned.

Dear Welshcakes, I was very moved by this too and feel for what you and your mum went through, your sense of helplessness. Rest assured that you were always there for your mum - right to the end. You were her best friend, like I am with my mother, and I cannot believe she will not be there one day. She has started to get confused, and you have made me realise I must spend more time with her.

Thanks for sharing that. I have four similar types of stories, with my grandparents, different health issues, but very traumatic all the same. My mum was very involved in caring for each of them. It was wonderful that you could be there for your mum. I wonder being so far away, how I will feel, potentially not being able to help much. There really is nobody else, who can make the decisions in a persons interest, especially when that person is unable to think or act rationally. A great deal of empathy and diplomacy is required.

We moved to Australia five years ago after an unsuccessful attempt to settle in America. Not a good time to process immigration applications in late 2001. Elizabeths' dad had been sick off and on for many years. We were able to be around as his body finally packed up after a long time of not looking after it. I think that it would have been very difficult if we had not been around during that time. The kids and I got to know him a little and Elizabeth was able to transition into a life without her dad a little easier. He was stubborn and difficult to the end, which came pretty quickly, but his family was there for him as part of the caring team.

Oh Welshcakes, how I feel for you. How hard that must have been to write. Even after 14 years I'm sure the memories are still strong. What a terrible night, but you stood up for your mother when it counted and got the help she so desperately needed. How lucky you were that the hospital people listened to you. There's a very fine line between being a strong patient advocate and being considered an hysterical relative. Trust me, I've seen it many times in my hospital career.

I don't know if that's the first time you've written it down, but if it is you will have seen that there was nothing else to be done. The damage from the stroke could not be reversed but you made sure she had the best care for the rest of her days.

Like James, I have something I can't write about, even after 53 years. That's the suicide of my father when I was 18. With my blog I'm supposed to be working up to it. I even have a draft post with a title and a few lines. Still I put it off with my ramblings on about books and this and that.

Take care of yourself, welshcakes. Give Simi a big hug from your blog friends who are counting on her to give you some special support and attention.

A couple of years ago - 18 months actually - I would have jumped up and down and screamed on your behalf - now I know there is no point - it won't make the night time doctors care, it won't take the hurt, the pain and the injustice away..

There was nothing more you could you have done. James is right - it is done. Not gone, or forgotten - just done - a chapter of your life to remember and share in a caring community, for those who also seek comfort and affirmation that it is not just happening to them and then you must move on.

Your mother was lucky to have such a daughter as you, and you to have such a mother as her - pick and mix the good times and move on with those.

How frustrating for you! I think as well as screaming and shouting, I would have 'decked' him! So terribly sad to have had to watch this happen to your mother.

It was kind of like the "sound of one hand clapping" wasn't it? You feel as if you've become invisible...no one can see you or listens to you...they show now empathy or understanding. It's you against the world...against "them"! So distressing for you to have been put through that. Hold the good memories and the memories of the treatment given to your mother in the hospital before she passed away, foremost in your mind.

Wow! Well, the good thing about posting this - and believe me, I did hesitate about it - is to find how many wonderful friends I have out there. [I've been feeling a little low this week, for reasons which will become clear over the next couple of days, if you can stand it!] Oh, Ruthie, sorry I made you cry! I don't know what we can do to change the system and I must be honest here and say that I do not think I could have taken care of my mother through late Alzheimer's if that had been what it was. I was a career bitch at the time and anyway, we needed the money; I was not the tender daughter Mum needed - not until I realised what was happening and no one else did. I learnt a lot during my contacts with the Careline at that time: I learnt how Alzheimer's sufferers can be violent, think the bedroom is the toilet and drive a family apart. How their long-term carers cope I do not know. One thing I do know, though, is this: there HAS to be proper respite for the carers and they need it often. I had a friend in Cardiff who had a severely brain - damaged child and this woman worked in the caring services herself. Yet she was so worried about earning for her child's provision against the day when she would no longer be there that she didn't even know there was respite provision for her. So it's a matter of getting the information out, too. Dear Ellee, most cases do not progress as quickly as this one did. But yes, do what you want to do with your mother NOW. I think we all imagine our mothers will go on forever. CC, thank you for sharing your experiences, too. When a person is not able to act rationally, it is so difficult, as you say. But do not feel guilty for being far away: all parents want what is best for their children and they want us to be happy, above all else. If they say they are not, it is only cantankerousness setting in with confusion and it is hard, but we should try not to be hurt by that. I'm glad you were able to be around for Elizabeth's Dad and it must have been a comfort for you all and for him - even if he was not, perhaps, able to show it towards the end. I think the best thing children can do for their parents is what you are doing - giving your own children the best childhood you can. That is the ultimate compliment, isn't it? Thanks, jmb. Yes, I was so scared that night of being regarded as hysterical [and I wasn't far off it, probably! ] But thank god the hospital staff believed me and listened to me. I wrote it down roughly a few years ago and then it was a long time before I could look at it again. Then your post and the 2 I read tonight got me thinking that maybe I should post it, as sadly, it may be happening to others even right now. Oh, jmb, I am so sorry about your father. You will write about it when you are ready and you will find so many people who understand, as I have tonight. Take care. Simi, especially, appreciates all the love. Shani, thank you. I have been wanting to say to you for some time that though, of course, I am not going through what you are, I do know what it is like to have your world fall apart in an instant. And for me that instant was in that phone call from Mum. I do have good memories of Mum but it took some time for these to come back. God bless you, too, cara amica. Thanks, Lee. Well, I think I was pretty close to decking him , too! You are right - you feel invisible, not yourself, almost as if you are crazy.. but I do have the good times to hold on to. xxx

Dearest Welshcakes - I have only just read your post and feel sad I didn't at once get to you when it first went up. Your strength and courage shines through, as indeed does your grief. James said it all - it's done and all we need to remember is that so many of us have had similar experiences, or even different ones, that have caused us the same amount of pain. The human family truly is so, with common desires and triumphs and sorrows - we are all rooting for you and holding you in our thoughts. I am full of admiration for you in sharing this and hope too it was in a way cathartic to let it out - too many of us keep it all bottled up. You take care - you did all you could and hopefully the good memories outshine the bad.

Welshcakes, This was a very powerful post and has stirred powerful feelings in us too. Thank you for sharing your experiences, we do all learn from each other. I do feel for jmb too, living with suicide must be so very difficult, it is something I would like to write about at some stage.

Sally, thank you for your kindness. You are right : we all have our sorrows to bear and in this we are, or should be, a human family. As I said, I wrote it a while ago but looking at it again was cathartic, yes. the news today reminds me that there are things which are more terrible... Thanks, Anne. I'm fine, honestly. It just seemed the right time to talk about it. Ellee, thank you again. I just cannot imagine the pain of living with suicide. It will be brave of you if you post about it. James, OK. I don't know much about what has been going on with Oliver K, but have read a little about it tonight.

The NHS was equally unhelpful when my mother was dying, so much so that the consultant called me to apologise. I have found, on the other hand, that hospitals in Italy are clean and efficient so, look on the bright side, you'll be better off there if anything goes wrong.

Like James above, it is hard to know where to start. It seems crass to say "thank you for sharing" but nonetheless that is exactly what I feel. As with so many of the others who have commented, the story of your mother's illness touched off a nerve with me, although my mum's illness thankfully did not involve either dementia or such an appalling doctor. I suppose the sad truth is that we are all touched by moments of tragedy but at least out here on the interweb we have the chance to meet people who can share our experiences and let us know that there is a whole community out there that can understand.

The reaction of so many readers is a reminder that, for all its faults, the web really can provide us with a community of friends we never could have met in real life.

Welshcakes, I first read this on Sunday, and was too overcome to leave any sort of comment. I'm not sure I'm much more capable today, except to echo what so many other commenters have said, that you should be proud of having found the strength to defend your poor mum's interests in the face of dismissive medical staff.

Again, like yourself and a disturbing number of the commenters, I have my own experience of watching a loved one suffer at medical hands; the ramifications still affect me/us each day, and I'm not yet ready to go into more detail. But, as someone who wasn't able then to defend that person's interests, I am heartened to learn from your example that it can be done.

Dear Welshcakes, I know what you mean about those nights when you cannot sleep and you relive these awful moments.

:(

You did a wonderful job defending and caring for your mother. My only experience in this kind of situation was with a 92-year-old friend except that my efforts to help merely caused more trouble.

She, like your mom, was a sharp and vital lady who suddenly began to deteriorate and it was heartbreaking and frightening all at once.

It was an awful, awful situation and I did my best to help (her only family was over 800 miles away--I called them frequently with updates) but several of my efforts only seemed to worsen the situation.

On the nights that I can't sleep I revisit every mistake I made and it is pure anguish.

I remain utterly stunned and very touched by the response I have had to this post:UPM, thank you for coming over. Yes, we all have our share of tragedy and I agree with you that the web is a wonderful help in them, or can be, for we find people who understand. I think that watching a parent die is terrible, in any circumstances, and it is not talked about enough; we are supposed to be stoical. Yet it is one of the saddest things that will ever happen to us. You take care, too. Ian A., I really thank you, too, for commenting for it must have been difficult for you. It is, indeed, disturbing that so many people who have commented here have suffered in a similar way at the hands of the medical profession. Even as I write, I am wondering if there is, even now, something I might be able to do about it. What worries me is, say, the case of an old lady whose husband has dementia and she is faced with a dr like this; maybe she was born into a generation that would not stand up to medical professionals - what then? We all come to terms with these things in our own time, Ian, and we all do what we can with the information we have and the resources we have at the time. We can all be wise in retrospect. Please don't beat yourself up about your own situation. I'm sure you did all you could. Take care. Bonnie, you, too, did all you could and you acted in good faith. Don't - please don't - dwell on any "mistakes" you think you made. You helped all you could with the knowledge that was available to you at the time. That is all any of us can do. The lady was lucky to have you, my friend.